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09-17-2013, 02:22 PM | #1 | ||
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Quote:
I don't know about you but I am no doctor but unlike most all doctors what I know about severe Gilles TS was not learned from reading a book or taking lectures. What I know about it is from living with it for over 40 years and to me that trumps anything read in a book by someone that has never experienced it. That's just my opinion. I'm not saying doctors do not know what they are doing but I am saying "some" doctor don't. Most every doctor I have seen are all alike. The first thing they want to do is throw me on a handful of pills that may indeed help with TS and some of its symptoms but at the same time cause me awful side effects that are just as bad if not "worse" than the TS itself. It's a find line either way. As I said before I understand and know that some can and will overcome this disease and I am very happy for you and your son, especially your son as severe TS can ruin a persons life it the proper steps are not taken. Sometimes no matter the treatment a person's life is greatly altered to the point they cannot function in daily life. Even someone like myself that does not respond to most any treatment gets some relief by knowing what to do and when to do it such as treatments...i.e. meds, therapy and yes your route as well. But, people like myself feel like freaks for lots of reasons. One reason being because so many TS clients can be cured if you will or at least get to the point where the symptoms are controlled enough to where they can at least drive a car, use a knife in the kitchen, carry on a conversation without cursing and so many other things that I'm sure you are aware of. When a person has a severe disease of any kind it is crazy to not try any and all methods of treatment before throwing in the towel and starting strong and dangerous meds for life. Again, that is why I kept telling her that therapy and keeping him active by not letting him withdraw from others his own age is key with dealing with the anxiety at this point in his life otherwise he may end up being like me and that is something no child deserves. My prayers go out to him and his mother and I hope she finds relief for him no matter what form that relief comes in. I did not come straight out and say it but when I said to her that therapy and keeping him active was key that was my way of saying that meds should not be the first line of defense. Anyone that has any kind of disease will have to face it as an individual at some point and it is much wiser to MAKE a child face it at a young age vs. letting him become withdrawn and doing even more damage than the TS itself in the long run. I cannot say it enough, I'm so glad to hear of your son's recovery. I really, really wish that everyone could have the same success as he has experienced. I think you said his dad and grandfather has or had TS. If I'm correct then I do not have to tell you just how devastating TS can be for a child or an adult. You say that they (whom ever they are) are coming up with new ways to treat TS. Well, in my opinion TS has been and still is on the back burner like some other diseases. I doubt that TS will ever get the attention it deserves. Also, in my opinion the reason TS will not ever get the attention (research) it deserves is because there is not enough money in it for the pharm companies to be made. They make their money with drugs that affect lager percentages of the general population and TS does not rank high enough and I fear that it never will. One other thing that worries me is that almost all foundations/organizations for cancer etc.....are not government run even though they get government funds (in large amounts) and funds from pharm companies (in even larger amount) where TS is given far less for the obvious reasons $$$$$$. Another thing is he ssa and TS. The ssa does not even see TS as a reason to be disabled. If a person that has TS files a claim they will NEVER get approved unless they have not one but several other issues to accompany the TS such as depression, anxiety and the list goes on. But, there are people on disability for depression alone or anxiety alone and that does not make sense to me. It should not matter what disease a person has. What should matter is how severe that particular disease is and how it affects them whether that disease be TS, depression, bipolar or what ever. It should be a level playing field but it is not. Anyways, if I get going I sometimes forget and will ramble on and on so I will end it here as I think most already know what I'm saying anyway. Rake |
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"Thanks for this!" says: | Lara (11-10-2013) |
11-10-2013, 03:36 PM | #2 | ||
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Legendary
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Welcome to the forums, rake. I've not been reading here for ages so haven't caught up with all the messages before now.
I just wondered why you differentiate TS from "Gilles". Gilles was M. Tourette's first name. TS is Gilles de la Tourette Syndrome (sometimes called GTS). I'm thinking perhaps you mean Tic Disorder when you were talking about the difference between TS and Gilles TS? I'm in a different country, so can't help with the ssdi or ssi question I'm sorry. Hudsmom, if you're still reading here... My son took Clonidine for a very short time when he was young. He had a lot of side effects. I hope your son is doing better now. |
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01-15-2014, 12:28 PM | #3 | ||
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New Member
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I have not been able to tell my family about my TS (except my husband and sister) because it is so anxiety provoking for me. I am glad to have found others who have gone through the same process I am currently going through. Trying to get an official diagnosis and start the long road ahead to get my anxiety under control.
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"Thanks for this!" says: | Lara (01-16-2014), St George 2013 (01-16-2014) |
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